2nd Vaccine

Yesterday was David’s 2nd vaccination at the Children’s Hospital in Pittsburgh. It’s about a 5 hour drive to Pittsburgh, but it is a very pretty drive. David worked on his homework on the way, but we took a break on the way there and stopped at a quaint organic restaurant in West Virginia. I made a comment about David needing to expand his palate if he wants to be a chef, and the waitress overheard me. She went and got the chef, and he spent a little time talking to David about the restaurant business and how to make meringue.

We arrived in Pittsburgh to some pretty cold weather. Luckily, we park in a garage for the hospital, so you don’t really have to get out in the weather. David wore his new “deer” hat (a gift from Mayumi) and he was very popular at the hospital. The nurses all thought it was very cool, but this little girl on the elevator just kept looking at him like she had never seen anything so odd! It was pretty funny.

David was reading a book during his appointment that he kept sharing with all of us. It had pictures of poorly written signs, and it had all the nurses asking what he was reading. We were able to spread a few smiles around, which always makes everyone feel good.

Everything went really well with the medical stuff, and they seem pretty pleased with his progress so far. They thought that David should be getting out and about more, and told him to push himself a little bit. We finished at the hospital in time for a late lunch and then started the drive home. David worked on homework again on the drive back to Virginia, but we made another pit stop in West Virginia. This time it was a different locally owned restaurant, but we were just as pleased with the food. They know how to eat in West Virginia! Fresh, locally grown food with creative ingredients.

We are thankful for the little things we get to do with David. It’s difficult not being able to share the same amount of time with Austin, but school prevents us from being able to take her with us. (David’s treatments are always on a weekday which means missing a day of school.) We  try to make up for the time apart in other ways, but it never seems like enough. I guess as a parent, you are always trying to juggle that kind of stuff, but it seems more pronounced these days.

17th Birthday

I feel like I should start every post with an apology because I haven’t written every day. What I’m doing, though, is living, so if the posts aren’t coming every day, assume that is a good thing!

David just celebrated his 17th birthday on January 15th. I was so thankful that it was my “official” weekend with him and Austin, so we got to have a lot of quality time with them both. It started out with the Friday Night Crew – a group of kids who gather regularly with Jimmy on Friday nights. This particular night, there were a couple of guitars, so the kids had fun singing and listening to the guys jam. David got tired much earlier than the rest of the guys, so he came downstairs for bed around 9pm.

On Saturday morning, Mark picked up David and Austin for a few hours, and they spent some time celebrating with a few friends.  On Saturday afternoon, we just chilled. Saturday evening was a fairly low-key dinner with some of the kids’ adopted grandparents (Jimmy & Sarah’s grandparents) and a couple of friends. Sunday was a party with David’s friends. It was a fairly small gathering because we weren’t sure how quickly he would tire out. He was totally energized by his friends, though, so we ended up going to the movies. We saw The Green Hornet. They all loved it. It was a great ending to a really fun day.

On Monday, the kids were out of school, so we took them to Sweetwater for lunch. It is part of a local chain that we all really love. We ate way too much and had a great time. We learned that our favorite rolls are called “Ozzie” rolls, but we didn’t get a good explanation on why they are called that.

Tuesday was a snow day, so we got to hang out with the kids for a little while in the morning before they went back to Mark’s house. It was a very special weekend.

Fatigue

David is still having issues with fatigue. He tolerated the vaccine in Pittsburgh very well, this is just an after-effect of the radiation. I think that it is really bumming him out not to have the energy to do stuff. So if you could pray that this phase passes quickly, that would be great! His 17th birthday is this weekend, so we are hoping he has enough energy to enjoy himself. We are planning to keep things pretty low-key, but there will definitely be lots of fun with friends!

I’ve only seen him briefly this week, so I don’t have a whole lot to add about him or Austin. I can tell you that there was another meeting of the Students Supporting Brain Tumor Research – Virginia, and they are really getting things pulled together! It’s going to cost about $1,000 to file for their non-profit paperwork, but they are working steadily toward that goal. It is so cool to watch them work on building something that will help so many people!

Clinical Trial Begins

We returned yesterday from our first trip to Pittsburgh for the vaccine clinical trial. I was so impressed with the hospital there! It just opened in 2009, and felt more like a cool kids’ hotel than a hospital. I posted some pics on Facebook, and I’ll try to remember to add some here as well.
David rode over to Pittsburgh with his dad, and Richard and I met them there. In just the last few days, David has started having some pretty major fatigue from the residual effects of the radiation, so he slept the whole drive over. It was a pretty drive, taking us through WV, MD and into PA. Four states in five hours! It’s hard to see David so lethargic, but in the grand scheme of things, it is so much better than a lot of the other symptoms he could be having. We’re counting those blessings wherever we find them!

We met with Dr. Jakacki and her team, and they did an MRI. There is still a lot of swelling, but the tumor doesn’t appear to have changed. That’s a good thing. (The tumor being GONE would be better, but again, counting those blessings!) I think we were all a little anxious about the vaccine and what that would mean for David, but he tolerated the vaccine quite well. He will have a knot on his leg where they administer the shot, and it could take days – up to months – for the knot to go away. Other than that and some soreness in his leg, they don’t anticipate any major side effects. Again, blessings counted!

We are so thankful for the prayers that have gotten us this far. It has become VERY apparent to us over the last few days how those prayers have carried us over troubled spots that we weren’t even aware of until we looked back. God is leading us, and when that doesn’t work, He is carrying us. Please keep praying with us for David’s complete healing.

Next Phase

Ok, so we are on the cusp of the next phase of David’s treatment. We will be driving to Pittsburgh tomorrow for David’s first visit to the Children’s Hospital of Pittsburgh. They will do an MRI tomorrow afternoon, and we will get to meet with the doctor for results on Thursday morning. David will start the clinical trial on Thursday with his first vaccine.

I talked to David about it yesterday, and he said he was excited. I’m glad he’s excited. I am too. The science behind these vaccines could really be the future of cancer treatment. We certainly are hopeful (and prayerful) that this will be the answer we are searching for.

Thank you for being with us on this journey. We would appreciate your prayers as we head into this next phase of treatment.

Christmas

We have had a wonderful few days to celebrate Christmas. I hope you all were able to enjoy spending time with family and friends this holiday season. I felt a little bad for not updating as we went along, but now more than ever I realize how important it is to be in the moment. So I tried, as much as possible, to just be there with the kids and Richard this Christmas.

Our visit to California was so much fun, but not exactly what we had planned. You see, they got more rain during that week than probably the rest of the year! Schedules were constantly changing due to the rain – folks being sent home from work early, soccer games cancelled, roads flooded – you get the idea. So we sort of threw our schedule out the window, and just enjoyed hanging out with the friends that lived close by to the Horans. (They were generous enough to let us stay with them, and since our kids adore each other, it worked out really well.)

We especially enjoyed the wonderful food options in San Diego. There were so many organic grocery stores to choose from! It was a nice change from the selection in Fredericksburg. It was bittersweet leaving San Diego, but we were all excited to get to Kansas and see our home and friends there.

Our flight arrived late, but our great neighbor, Jay, was there to pick us up at the airport. I can’t even begin to tell you how blessed we are to have their family in our lives. The Wickhams moved into the house next door to us, and I’m sure they never expected how their lives would be changed! They have been a pillar of support for us, anticipating needs and filling them with a smile. They are truly an example of God’s love right here on Earth.

The weather was mild in Wichita, but we didn’t get out much. We had several family/friend parties, so we were mostly at home the whole time. David made it out to the movies once with his friend, Mayumi, but other than that I think the only time we were out was for shopping.

One of our friends is an excellent amateur photographer, and he made a video of the neighborhood party. You can check it out here: http://www.youtube.com/watch?v=phUMgIF_XQI

It was hard to come back to Virginia. It’s really hard to go from full access to the kids to virtually no access to the kids. I was hoping that David’s new computer would give him greater access to his friends and family, but so far it hasn’t made a big difference. (He has been unable to get it to connect to the network at his dad’s house.) Austin got an iPad for Christmas, but she hasn’t been online much either since their return to VA. Hopefully things will settle down after the holidays and they will be more connected.

We are so thankful to all of you who are praying for David’s healing. Please also continue to pray that David’s spirits will continue to be as high as they were while he was with us over the holiday break. It’s been a long time since I’ve seen him that happy and relaxed.

Our wish is for everyone to have a joyous New Year filled with love and close communion with family.